As someone striving to be an advocate in the gluten-free community, it has become apparent to me that there is a huge issue. There is a divide in the gluten-free community and it’s making us weak. It’s making people confused when they try to serve us food and it’s causing some of us to be bitter.
In this post, I hope to discuss why there is such a huge divide and hopefully this post can serve as a method to start a PEACEFUL dialogue between conflicting sides. Ultimately, I hope to bring everyone closer together because living gluten-free isn’t easy and requires support. Until we can support each other we can’t expect people outside of the gluten-free community to support us.
Reasons behind a Gluten-Free Lifestyle
Notice I said Gluten-free lifestyle and not a gluten-free diet. I used this specific terminology because lifestyle implies that eating gluten-free is for life versus a gluten-free diet which might be lifelong or temporary situation.
First I want to talk about why someone might be living gluten-free. I think there is a huge misunderstanding between people diagnosed with celiac disease, everyone in between, and fad dieters.
This is where I see most of the divide in the gluten-free community. Celiac disease is an autoimmune disease where your body attacks itself when you consume gluten. Symptoms include chronic inflammation, GI upset, brain fog, fatigue, malnutrition, damage to the small intestine etc.
To be diagnosed with Celiac Disease you have to have a positive blood test and biopsy. For both, you should eat gluten before testing or you might get a false result.
Something to remember about getting a Celiac Diagnosis is that it requires that you have access to health care but more on this later.
Lastly, people living gluten-free because of celiac disease tend to need strict gluten cross-contact prevention. This means that people with Celiac Disease tend to need gluten-free food that follows stricter guidelines than people with NCGS (but not always, sometimes people with NCGS are more sensitive to gluten than people with Celiac Disease but more on this later).
Non-Celiac Gluten Sensitivity (NCGS)
People with non-celiac gluten-sensitivity (NCGS), also known as gluten sensitivity or gluten intolerance, often have determined their sensitivity through food sensitivity testing, elimination diets, and through negative celiac disease test results.
People with non-celiac gluten-sensitivity often experience chronic inflammation, GI upset, brain fog, anxiety and much more. The difference between non-celiac gluten sensitivity and celiac disease is that people with NCGS don’t experience small intestinal damage when they eat gluten. It’s important to note that just because there is no intestinal damage, that doesn’t mean people with NCGS aren’t suffering too.
This group of people living gluten-free often are unsure whether or not they have Celiac Disease or NCGS. People in this category simply know they feel better gluten-free.
Often people who are unsure where they fall lack access or lacked access to health care at some point. That or their health care providers weren’t listening or failed to do testing and these people had to take their health into their own hands.
Typically these people were seeking relief in GI issues and tried a gluten-free lifestyle to see if it helped resolve their issues. Often when they find going gluten-free helped, they try to seek help from health care professionals only to find that to be tested for celiac they’ll need to suffer through 6 weeks of eating gluten. Often this isn’t feasible (who wants to suffer through eating 6 weeks of eating gluten if you know it’s going to be painful) so they choose not to be tested and to maintain a gluten-free lifestyle.
Other Medical Diagnoses
There are a few health conditions that living gluten-free can help manage. Often people with Hashimoto’s disease can find symptom relief by living gluten-free. It has been suggested that people with PCOS or IBS could also find relief by living gluten-free. There are other health conditions too where living gluten-free can be helpful in symptom management.
People managing health conditions with a gluten-free lifestyle will likely have health care access. Additionally, their cross-contact and gluten exposure tolerance will vary greatly. Some requiring strict gluten-free guidelines and some requiring more lax guidelines.
Fad dieting is a huge reason behind people discrediting the need for safe gluten-free food. At some point, someone decided that going gluten-free would be a great way to lose weight. People who are gluten-free for dieting purposes often don’t care about cross-contact. These people are often the ones enjoying cookies on the weekend but being strict during the week.
I want to make it clear, while fad dieters a small part of the problem, they are not the sole cause for our struggles. Additionally, fad dieters are struggling in their own right and deserve empathy.
As someone diagnosed with celiac disease, I empathize with anyone living gluten-free who doesn’t have the celiac diagnosis behind them. I support everyone who is living gluten-free for health reasons but I am very concerned about fad dieters.
Concerns Expressed by People With Celiac Disease
I opened my Instagram up to discussion with my followers. I specifically asked them what some of their concerns were towards NCGS and other gluten-free living folk. I want to make it clear here, it’s frustrating I get it, and you are allowed to be frustrated. However, don’t take your frustration out on someone who is trying to do the same thing you are, find safe food.
“Some people don’t care about cross-contamination”
It’s very frustrating not to be on the same page as everyone else living gluten-free. Some people are lucky enough not to have to worry about gluten cross-contact, or they don’t even know they have to worry about it. The problem here lies in the gluten-free community needing to be able to communicate their individual needs and have those needs (no matter how different from the other) be respected.
It shouldn’t matter if gluten-free Kate down the road ate a bowl of Cheerios at your house. I’m not touching that cereal with a 10 ft pole, now respect that. Or it shouldn’t matter if the last gluten-free person didn’t ask you to change your gloves before making their meal, I am asking you to please do so, so please do.
We also shouldn’t forget, having support is crucial. Some people lack support in their gluten-free lifestyle and can be pressured into not advocating or speaking up for their needs.
In my opinion, this is a matter of getting people to respect our individual needs and stop expecting us all to eat one specific way.
“I only feel “negatively” towards people who don’t take their gluten-free diet seriously”
Yes, fad dieters are a problem. They are struggling and their struggles are starting to cause us to struggle. We have diet culture to blame for this.
“The Choice Was Taken Away From Me”
This is a very common view point that I see often. People with Celiac disease have to go gluten-free or they risk nasty forms of stomach cancer and malnutrition. They feel like their choice was taken away from them because there is no “cheating” ever for them.
While I think their feelings are valid, I encourage everyone to first consider are you upset with people committed to living gluten-free or are you upset with fad dieters? For a lot of people living gluten-free for non-celiac gluten-sensitivity or even those living GF to manage health conditions, eating gluten means getting sick.
Maybe they aren’t at as high of a risk for stomach cancer, but they still get sick just like us. They often are very proactive at trying not to get sick. I don’t know about you, but if I had a choice between eating bread and spending hours on the toilet, or not eating bread and being free from the porcelain throne, I’m not going to eat bread…
Issues I see Fueling the Divide in the Gluten-Free Community
There are a variety of concerns and arguments fueling the divide in the gluten-free community. That being said, I see two issues that are fueling this divide. The first problem I see is that not everyone has access to health-care, especially in the United States. The second problem I see is that people expect a gluten-free lifestyle to look one way, when in reality, a gluten-free lifestyle is going to look different for everyone.
Access to Health Care
First of all, health care in the United States is 100% a privilege. Not everyone has the time to see a doctor, the resources to get to a doctors office, or health insurance. Not to mention, diagnostic testing is expensive. So not only will you have to have health insurance but you’ll likely have to fork out some cash too. Furthermore, getting tested for celiac disease requires that you have a health professional who listens and is open to testing.
I just want to say that there is a serious problem in our healthcare system if people feel so unheard and lack access to health care to a point where they take it upon themselves to try restrictive diets in an attempt to find relief.
We can tell people all we want not to try out restrictive diets on their own but when they feel like they have no other option, it’s still going to happen. I have a lot of empathy for people who feel like they have to do it on their own. Who lack access to health care or feel unheard by their doctors to a point where they feel like they have to take their health into their own hands.
Imagine that you’re stuck in the bathroom 5+ time a day but you have no idea why. Now imagine that you go to your doctor with your concerns and they tell you that you likely have IBS. They give you some meds to manage symptoms and send you on your way, but you still find yourself in the bathroom all the time. Then someone suggests you try going gluten-free, so you do, and suddenly you’re not in the bathroom for hours. For these people, and anyone else finding relief living gluten-free, their gluten-free lifestyle isn’t a choice, it’s a necessity; just like people with Celiac Disease.
If you’re reading this and feel like your doctor isn’t listening to you, you have EVERY right to go find one who will. PLEASE don’t go on this journey alone!
And to the people struggling to find resources to see a doctor and find relief, I see you and I wish there was more I could do to help.
A Gluten-Free Lifestyle does not look the same for everyone (even in the Celiac Community).
For all my fellow friends with Celiac, have you gotten this beautiful number before? “Oh you can totally eat this, my other friend with Celiac did”
So you read the ingredient label and go… “Yeah, I’m not eating that”. If this hasn’t happened to you, you’re lucky. This has happened to me so many times I can’t even count.
A huge reason behind why there is such a divide in the gluten-free community is because we fail to understand that everyone living gluten-free has different gluten-free standards. Every person diagnosed with celiac disease is going to have a slightly different gluten-free lifestyle than the next. The same goes for everyone else living gluten-free.
A gluten-free lifestyle is highly individualized. You can argue all you want that people living gluten-free for Celiac have increased needs etc. but even people living gluten-free for Celiac Disease require an individualized approach with individualized gluten exposure standards. It’s not just the NCGS community that has different standards, so do people with Celiac Disease.
The real problem is people expect a gluten-free lifestyle to look one way, and one way only, and that’s just not how it works.
Everyone living gluten-free (Celiac or not) has a different gluten-exposure tolerance level. Studies have found that people with Celiac Disease can experience intestinal damage at exposure between 10mg-100mg (though doctors often try to encourage people with celiac to stay below 10mg). People with Non-Celiac Gluten-Sensitivity can experience symptoms in that range of exposure as well.
People living gluten-free are coming from a variety of backgrounds. From living gluten-free for symptom management related to medical diagnoses, or living gluten-free because of NCGS, to following a gluten-free lifestyle because of Celiac Disease; we are all in this together.
Living gluten-free is isolating, restrictive, and difficult. Allowing parts of our community to struggle and go unsupported is hurting us all. Again, if we can’t support each other, how can we expect others to respect and support us?